The OPEN project is a EU H2020 funded research project that investigates DIY Artificial Pancreas Systems (DIYAPS).
Our study has four main aims 1) to examine the clinical and 2) quality of life outcomes of users before and after starting on a DIYAPS, 3) to identify potential technical improvements that could be made to artificial pancreas technology of all kinds, and 4) to investigate how more people can benefit from the innovations being developed by the DIY community.
The OPEN project on Open Humans will enable a simplified way for the participants of the study to share their retrospective device data sets with the OPEN research group.
As part of the OPEN survey where participants will answer questions in a survey about their quality of life and their diabetes and others, they will also be asked to join Open Humans and the OPEN project to donate their device data. This will allow us - with users explicit consent (optional) - to link the survey answers with their device data. Everything will be explained in depth as part of the information sheets for the study, and has been approved by the IRB overseeing the OPEN project.
Furthermore, in order to make participating as straightforward as possible, we have developed a system called “Gateway” (see attached screenshots) that guides the user through the process of filling out the survey and joining the OPEN project on Open Humans. For simplicity, linking the REDCap survey dataset with the Open Humans Project Member ID is done automatically in the background.
The study has undergone ethical review at University College Dublin and has received approval by their IRB.
This project has received funding from the European Commission’s Horizon 2020 Research and Innovation Programme under the Marie Sklodowska-Curie Action Research and Innovation Staff Exchange (RISE) grant agreement number 823902.
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- Activity page: https://www.openhumans.org/activity/open/
- Project review guide: Activity Review Guide
Project guidelines: https://www.openhumans.org/community-guidelines/#project
- Title: OPEN
- Managed by: Shane O’Donnell (University College Dublin)
- Description: The “OPEN” project brings together an international and intersectoral consortium of patient innovators, clinicians, social scientists, computer scientists and patient advocacy organizations in order to investigate various aspects of Do-it-Yourself Artificial Pancreas Systems (DIY APS) that are used by an increasing number of people with diabetes.
- Project website: https://open-diabetes.eu
- Connections: 2 members
- Data received: Diabetes data (e.g. CGM, insulin pump etc.)